Kids Post Cancer Diagnosis?
October 15, 2012 9:45 PM   Subscribe

Diagnosed 3 months ago with incurable (but treatable) lymphoma. Deciding on children - Has anyone decided to have kids post cancer diagnosis?

I was told 3 months ago that I have Follicular Lymphoma, grade 1-2, stage 3. It's rare for someone my age, but it is indolent (slow growing) and treatable. I just finished 4 weeks treatment of a monoclonal antibody therapy and both masses have reduced by 65% already. It's the best possible outcome we could have hoped for.

The involved nodes are superficial - there's no organ, bone or marrow involvement and I am otherwise ridiculously healthy on paper as evidenced by all of the CT & PET scans, and MRIs, and every other diagnostic tool in the arsenel of my uber-thorough team of oncologists. The only reason they decided to treat instead of the customary watch & wait was due to swelling caused by the tumor position and growth in my left leg.

The point is, I am fully functional and unless I told you, you would never know that I have cancer. My husband and I both work full time and I have a side business that I love. We have lots of family and friends for support and excellent health insurance (thank god) so my quality of life is excellent. My doctors all agree that I am healthy enough that I will most likely die of something else. They think there is a very good chance of a cure being found in the next 10-15 years. We also understand the possibility that this cancer can eventually become more aggressive, but it might stay the same, too - there is no way to know what the future holds, and I refuse to live my life in fear. I could also be hit by a bus tomorrow so I am moving on with the plans I had before my diagnosis.

My husband and I have only been married a few years and were just about to start to try for kids. This turn of events was pretty cruel but using the antibody therapy rather than standard chemo enabled me to preserve my fertility. I can find plenty of women who were diagnosed during their pregnancy but I can't find anyone who has decided to go forward with having kids after their diagnosis. Obviously, I fully understand the reasons why someone would decide not to go forward with having kids after a cancer diagnosis. But my case is a wee bit different from most.

So, here is my question - has anyone had the experience of making the decision to have kids AFTER being diagnosed with cancer, curable or not? Can you share what influenced your decision whether or not you decided to have kids?
posted by inquisitrix to Human Relations (21 answers total) 4 users marked this as a favorite
Not cancer, but my brother and I both have an invisible, yet incurable, genetic disease. The diagnosis made me decide never to have kids. My brother, who is soooo much sicker than I am and facing end stage within the next five years, is now expecting his third kid. On purpose. He's decided to open that up to the universe and trust that it will work out.

Our decisions are completely opposite, and yet somehow I believe we're both right. You have no idea what the future holds. If you think you can bring a kid into this world and love her and teach her to explore and make the world a better place, no one is going to say no to that.
posted by mochapickle at 11:06 PM on October 15, 2012 [14 favorites]

I can find plenty of women who were diagnosed during their pregnancy but I can't find anyone who has decided to go forward with having kids after their diagnosis.

Check out forums for more common cancers which are often diagnosed in people younger than 40ish and have good long-term prognoses, like cervical, thyroid, and non-Hodgkin's lymphoma.

I had cervical cancer last year; it is common for treatments to attempt to preserve fertility in women of childbearing age whenever possible and the forums were full of women talking about having children post-diagnosis.

Good luck. I'm not planning on having kids (for reasons wholly unrelated to cancer) but I agree with your thinking completely.
posted by desuetude at 11:14 PM on October 15, 2012 [1 favorite]

I'm not a cancer patient or survivor but I can tell you that whether or not you get responses here, you are by no means alone. If you're under 40, you might find it helpful to have a look at Stupid Cancer and its parenting forum.

A medical writer and breast cancer survivor named Gina Shaw has written a book about her experience of making reproductive decisions after her diagnosis (Having Children After Cancer.) (You're going to find a lot of the people dealing with this are breast cancer survivors, because it's a cancer of young women and because it forces reproductive decisions on patients earlier than planned because so much of the available therapy carries a substantial risk of permanent cessation of ovarian function. I get that some of what you're dealing with is the indolent-cancer dilemma, where you might well live for a very long time, and that it's different from worrying about recurrence and metastasis, but that thing of learning to live around an uncertain lifespan is pretty common across cancers, I think.)
posted by gingerest at 11:17 PM on October 15, 2012 [2 favorites]

My cancer has a dismal survival half-life. 90% of us die by around 48 months after front line therapy.

After treatment (several months chemo, then stem cell transplant) I figured to get another three or four years plus some time on palliative drugs before it was over. Well, I've been in complete remission since December, 2004. I may actually die of some oldfart thing instead of multiple myeloma, but it's been a while since I've dwelt on it.

It took me a couple of years to figure out that I was surviving. Each day is a gift. I didn't light both ends of my candle, I just went on doing my thing.

You already have stood at the edge of the pit and looked down. I say get back on your life and ride it out.

Best wishes to you and your family.
posted by mule98J at 11:26 PM on October 15, 2012 [14 favorites]

Erin Zammett Ruddy kept a blog and wrote a series of articles in Glamour about facing a cancer diagnosis when she was 23. She wrote about whether to become a mother (PDF) and what it was like to be pregnant (PDF).

Best of luck to you and your family.
posted by Snarl Furillo at 11:57 PM on October 15, 2012 [2 favorites]

Two old friends of mine - who met one another by chance, bizarrely - got married in 2007. She was diagnosed with cervical cancer a year or two after and had a hysterectomy. In March last year, *his* sister gave birth by surrogacy to his and his wife's biological children. They really wanted kids. It wasn't much more than that. They have a strong, loving family around them who supported them and they really wanted kids.

Good luck.
posted by MuffinMan at 12:41 AM on October 16, 2012 [1 favorite]

Several years ago I was crossing the street... In the crosswalk, walk signal, broad daylight, holding hands with my boyfriend. We are both very tall, to boot. ...and I got hit by a car. I'm fine, but really, we don't know what will happen tomorrow and things can change in an instant. I say, go back to life as usual to whatever extent you're able. Have the kids... and good luck!
posted by jrobin276 at 4:18 AM on October 16, 2012 [2 favorites]

You may want to check out this previous post, here. Some very good answers and links there.
posted by xm at 4:21 AM on October 16, 2012 [2 favorites]

It may help to replace the word "cancer" in your thinking and analysis with something else, like "chronic condition". "Cancer" rings a lot of doom bells, and, as you observe, you're not particularly more doomed than any of us.
posted by endless_forms at 5:45 AM on October 16, 2012 [2 favorites]

A family member had this same kind of decision to make too. Her oldest is in college now. Two things to consider:

1- Life is for the living. If you want kids and have the means, go for it. A potentially shortened life is MORE reason to do all the things you want to.

2- Kids are flexible. Even if mom isn't as healthy as the other moms, they don't care because that's all they know.
posted by gjc at 6:24 AM on October 16, 2012 [3 favorites]

The Princess by Gunnar Mattsson.

I read it thirty years ago. True story about a woman who was diagnosed with cancer at an early age and decided to have a baby. It's a great read. I highly recommend it.
posted by Michele in California at 6:39 AM on October 16, 2012 [1 favorite]

I would urge you not to (I was a kid with a mom that had cancer). Read all the way through the similar question xm posted, paying close attention to the perspectives and experiences of people who were kids going through this. Personally, I find it incredibly irresponsible to have kids because "life's too short" or because "I want to" without thinking about the position of that kid or child. And yes, kids will care, and unless they live in a bubble and don't talk and compare with their peers (note: all kids do this), they will absolutely know that things are much, much different for them.
posted by raztaj at 6:43 AM on October 16, 2012 [2 favorites]

If you are concerned about passing on this condition to your children, consider adopting. You will be able to have a family and provide a home to a child/children in need, and won't be putting yourself or your offspring at risk.
posted by DoubleLune at 6:44 AM on October 16, 2012

Read all the way through the similar question xm posted, paying close attention to the perspectives and experiences of people who were kids going through this.

That question is an entirely different situation -- the potential mother has a life expectancy in the single digits. Just because both diseases fall under the heading "cancer" does not make them equivalent. Saying a person has a parasite could mean they have a tick and it could mean they have an Alien.

Saying a person who has a life expectancy of (if I understand the situation correctly) a few/several decades shouldn't have children because some people with a different disease in a different organ with a different treatment and a different prognosis have lower life expectancies makes no sense.

If the OP is going to be significantly disabled by this disease, she should take that into account, but I see no breath of expected disability in her post. I have several friends in their 20's and 30's who are cancer survivors, and their health is indistinguishable from anyone else's.
posted by endless_forms at 7:24 AM on October 16, 2012 [5 favorites]

The blog Diary of a Dying Mom was written by a woman who had scleroderma and chose to have children after her diagnosis. It's not particularly analogous (her lifespan was shorter than it sounds like yours is), but you might find it interesting and thought-provoking.
posted by snorkmaiden at 7:33 AM on October 16, 2012 [1 favorite]

I don't mean any disrespect to your diagnosis, but the way you've described it, this sounds more like "should I have kids after a diabetes diagnosis" or something chronic but manageable diagnosis. If you feel well more days than you don't, and your doctors dont' think that pregnancy would exacerbate your condition I can't see why you wouldn't have kids if you wanted them.

Is this the kind of cancer where you will likely have to have on-going aggressive and debilitating treatments? Or is this mostly a watchful waiting situation over decades? If it's primarily watchful waiting I personally wouldn't let it rule my life, but only you know how well you actually feel and if you're the type of person who will be devastated constantly by the idea of leaving your child if something changes then, you know, maybe not.
posted by dadici at 9:20 AM on October 16, 2012

It really depends on your unique circumstances. Do you really need to make a decision now, right after antibody therapy (and so soon after the diagnosis)?
posted by prenominal at 9:54 AM on October 16, 2012

I have no personal experiences to share...but have you and your husband talked about what would you do if worst came to worst? Would he be okay being a single parent?

Good luck to you and your family.
posted by myntu at 10:26 AM on October 16, 2012

Your husband is still healthy, right?

This means that even if your cancer does mean you have a shorter life than normal, your kids will still have one loving parent to look after them. And, of course, that's the worst-case scenario. The best-case scenario is that you get to see their weddings and become a grandparent.

But think of it like this: Imagine you have kids. Imagine the worst-case scenario, that you die when they are relatively young. Now give your kids the chance to answer the following crucial question: "Because mommy died, do you wish that you had never been born?"

It sounds ridiculous when phrased like this, but this is the question you, and people here, are attempting to answer for your hypothetical kids. If you die young, would your kids prefer to never have been born in the first place?

Of course not!

So don't presume to make that judgment for them.
posted by zachawry at 3:46 PM on October 16, 2012 [1 favorite]

Wow, where to start? First off, thank you so much for your thoughtful and heartfelt replies. This is a charged subject and I appreciate you sharing your thoughts with me. And the links to articles and blogs are great. I will look into them in depth tonight.

Follicular Lymphoma is actually a bit tricky. It can resist treatment, transform into a more aggressive type (Diffuse Large B-cell Lymphoma) or I could live on with no further progression (knock wood). Or not. They might even find a cure during that time. No one knows how any one person will respond (since everyone's chemistry is different) and unfortunately there isn't a road map for success.

Our urgency of deciding on kids now is due to the fact that chemo will destroy my fertility and the chemo route may not be negotiable in the next couple of years. It is not something that can be passed on to children. My oncologists have very strong opinions that it is due to pesticides - apparently we live in a "Lymphoma Belt" in the US - a strong agricultural area. Other than two incidences of different types of breast cancer in my extended family (both that live out of state), there has been no cancer. So this was a bit of a shocker for us.

raztaj, I am so very sorry about your own very personal experience with this subject. I have a great deal of empathy for what you went through and wish healing for your heart. I had read the post that xm linked to, and felt the situation was different from my own, much like endless_forms stated.

However, I completely disagree with your judgement of people having children in less than idyllic situations. Calling me irresponsible for wanting to experience what life has to offer, including parenthood, simply because I can't guarantee that I can provide my child a life that is free of bad experiences is not realistic in any way. In that line of 'black or white' thought, you have set every single parent up for failure. We can have the best of intentions, but life is full of good and bad experiences, and ultimately what defines your life is how you are able to handle the adversity. I strongly believe that part of being a good parent is arming your children with the skills necessary to do just that because life is not fair, nor is it predictable.

My husband and I have talked about this in great depth and it's a big part of the reason we married - to have a family. We have both friends and family willing to support him in case something happens to me, and to take it one step further, in the event that something were to happen to him, they would be there for our child/children. We have a friend that has even offered to be a surrogate if needed. It's not something we take lightly and we wouldn't even be entertaining the idea without the love and support of the people that we have surrounding us.

I believe that having children is a selfish endeavor for every person that decides to do it. For me, it is a large part of the human experience, and I am sure I want to take part in it but there is a HUGE set of considerations that one is forced to make when cancer is part of the picture. When that happens, priorities come into sharp focus and having children was my very first concern. But this is new to me, so I thought I would reach out to see if anyone else had been through the same situation and could offer their take. I wasn't interested in discussing simply whether or not to have children, but more how people that have dealt with this sort of situation arrived at their decision with cancer in mind, which is a big difference.
posted by inquisitrix at 10:25 PM on October 16, 2012 [3 favorites]

I was diagnosed with follicular lymphoma when I was 24. Initially, we thought is was in only one axilla, so I had radiation. I had a recurrence 3 years later, but opted not to treat, because besides the PET scan, like you, I was ridiculously healthy otherwise, and at the time, the chemo regimen was quite aggressive. At 29, I started having symptoms. A newer regimen was available: bendamustine and rituxan. This regimen had very limited side effects compared to CHOP-R. Although bendamustine does report possible ovarian toxicity, I can tell you that I am 4 weeks pregnant today at 31. Also, the regimen was very effective. My PET scan was negative after 3 cycles.

The most important thing you said in your initial blog is that we don't know what is going to happen with this disease. I agree that you should not live in fear. I'm actually an obstetrician, so I know all the medical reasons that this pregnancy was not a good idea. In fact, I had decided not to have children. But God has quite a sense of humor and blessed me with a surprise. I have no idea how this will turn out, but luckily, it is out of my control. I hope the same surprise awaits you.
posted by janalaine at 5:04 AM on November 10, 2012

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